New Here - A Few Questions Re Tests

[Guest DONNAJ]

Hi, thank god I've found you!! my daughter (who is now 20mths old) has been difficult from the moment she was born (severe reflux/milk protein allergy and just generally a very unhappy baby/toddler).

But to cut a long story short and to get to the point, when she started solids at 6 mths - I can say we had just gotten the reflux undercontrol and she was okay for 2 mths - then the legs fell off, she started screaming at night (for hours on end - with us standing beside her cot) terrible behaviour - screaming/hitting/uncontrollable crying etc etc. After 3-6 mths of this we tried everything we saw a GI specialist who ran blood tests and just told us "everything came back normal" and booked her in for a biobsy/gastro thing.

We really didn't want to put her through surgery of any kind but felt we had little option. Anyway a friend recommended a kinnesologis/chiropractor - this person suggested/recommended we try her wheat free. After 3 weeks wheat free we had a different little girl on our hands (sleeping 12 hours at night, cooperative, smiling, no screaming or violent behaviour at all. This was on 21 Dec 05 - so 3 months ago.

My questions is - half of me believes she has celiacs but the other half just wants to be sure. What do you think?

where to from here? do I go back to the GI specialist explain what's happened and ask for more tests - I know from reading your forum however that I will have to put her back on wheat (and my heart aches at the thought of doing this). And will it show positive? or negative?

How long will she have to be on wheat to have the tests done?? By having her wheat free and then reintroducing wheat is there any chance that she will have no reaction?

I have 2 other children (one younger one older who have no symptoms at all).

Really appreciate your advice I couldn't help but feel somewhat at ease when I read the other posts and found some similar sounding stories. thanks Donna

[TCA]

Your little girl sounds a LOT like my 2 kids. My son had 2 biopsies, both negative. His bloodwork was "inconclusive" We went through MONTHS (over a year) of testing with him and kept coming back to Celiac. I finally just put him on the diet and he is thriving. Testing under 5 years of age is very unreliable. If you want to rule out celiac, you can do a genetic test. We did this with the kids. It's pricey, but insurance will sometime cover it. We did it through Prometheus labs. Our GI found that if you send it through Mayo BC/BS will pay, but check into it. My son had both genes and my daughter had one. This means that it is possible they have celiac. With their symptoms and response to the diet, we believe we have our answer and the GI agrees.

Also - you may know this, but the gluten free diet also includes the elimination of Oats, Rye, and Barley. Are you eliminating those?

Please let me know if I can help in any way.

[JakeARoosMommy]

I just joined and I am so happy to know that I have people to identify with. My son Jacob Noah is 20 months old and tested positive to gluten intolerance. We went through a couple of stool samples and blood tests. I had Jake on a gluten free diet about a month before the blood work. The blood test exposes the blood samples to gluten to see if antibodies are produced, so they don't have to be eating gluten to show the intolerance to gluten. If there are antibiodies, it is positive. My son also had GERD as an infant. He was also very moody as a baby. I think that it is interesting that there are so many parallels here between our posts. My son experienced with gluten diarrehea and vomiting after eating anything with gluten. He appears to be quite sensitive to oats as well. We will be seeing a GI specialist at Seattle Children's Hospital this next week.

[mmaccartney]

The intestinal biopsy can only rule IN celiac. If the test comes back negative, it is a useless test as it can provide a high rate of false negatives (like me!).

My heart goes out to you, having a young one that sick for that long is heart wrenching, and it sounds like you have had a particularly rough time with it.

It seems that she has had a very positive response to the gluten free diet, that is good!! Have you removed all gluten (rye barley and oats too!) from her diet or just wheat?? If just wheat, and she is not reacting to rye, barley or oats, then I suggest a skin prick allergy test for wheat allergy.

Going down the celiac path, (I'm a computer scientist not a doctor, however I am celiac, both my sons have severe food allergies, and I am quite certain one is celiac if not both...so ignore if you like!) I strongly recommend that you do not have the biopsy done. Why expose your daughter to the risks of anesthesia!!! I do understand that in the UK you can get medical benefits as a result of a formal diagnosis of celiac (requires biospy) but in the US, it doesn't matter. I second the suggestion for genetic testing. Some doctors will diagnose based on genetic testing, and response to gluten-free diet.

Also, an alternative is enterolab (Open Original Shared Link) it is a completely non invasive test that is performed in your own home and does not require a gluten diet!!!!!! I used them for myself, and will order the test kits for my children very soon...

Good luck, let us know how we can help!!!!!